AFO'S

[Guest guest]

Hi Everyone,

Sorry that I haven't been one to get into the conversations, but I have enjoyed

reading what everyone else has to say. I was reading today regarding the orthos

and this really struck a nerve. Let me tell you what I've been going thru for

the past 2 years. I have CMT 2 as far as they can tell, so I require braces

for both legs. My first set took me almost 1 year for them to figure out my

needs, which much to my disappointment left me with the steel braces attached

to my New Balance shoes, which have never been totally comfortable, but enough

to give me balance and I figured with abit of discomfort it was worth the

freedom

of not falling and not feeling too tired of trying to walk with the feet turning

out. So now these braces and shoes have outlived their use, as they are

beginning

to hurt.So back to the " brace man " for a new pair. Since last August, he has

tried to duplicate to some degree the last pair, and finally gave up and sent

me to another office " as a favor " to see if his co-worker could perhaps make

plactic AFO's.. I just came back today and they hurt so bad-so his excuse was

that I have such senative pressure points, not to mention that I could hardly

walk in the shoes without the feet turning over. He saids he'll try to put

straps on the bottom of the AFO's and that should hold my ankles in. What a

mess... He doesn't want to even try to reduplicate the steel ones, which I'm

trying to tell him that if he could with some modifications, than I would be

happy. So for now, I'm at his mercy to see what he's going to do with the

plastic

ones. Everytime I think I'm going to get some answers and help, I have to start

at square one again. I have to keep counting my blessings and than go back

in for the fight.. My question is that with MDA do they charge or do you donate

money? This may be my next step, but wanted some input. When I heard about

Gretchen's,

Stefan Moser and how fast that was completed I think there has to be people

that know what they're doing, and I have to just keep going till I find the

right one, but sometimes you just get tired. I'm sure you all know what I mean.

Look forward to some responses... Thanks!

Barb